Travels with a Flipcam: bringing the community to people with dementia in a day care setting through visual technology.

This paper discusses the exploratory process of making a short digital film with two women with early-onset dementia in a day care setting. The film was produced as part of a larger participatory video (PV) pilot project within the day centre. My main subject here is the adaptations to the standard PV process which I made in order for the two women, Pam and Carol*, to be able to take active part. These adjustments took account of their individual abilities related to cognition, physical mobility and social confidence. I discuss the development of an asynchronous approach, which involved my going out into the local community to capture images of Leeds City Market using a mini-camcorder (Flipcam) and the subsequent addition, at the day centre, of voice-over commentary by the two women in response to the visual images they saw on screen. Extracts from their film narrative presented here suggest that participation in the film-making process helped to reconstruct their sense of cultural identity and social engagement. The resulting short film is now being disseminated to Dementia Studies degree students by way of their social networking site

Participatory Video and Situated Ethics: Avoiding Disablism

yesThis chapter considers the adaptations which may need to be made to participatory video in order for it to be accessible to people whose marginalized status stems from a label of 'disability', whether this is physical, sensory or cognitive. To date there has been an ill fit between the emancipatory principles of participatory video, and the technical rationality (Schön, 1996) and hypercognitivity (Post, 2000) of its methods. Because participatory video is intended to enable marginalized, socially excluded and unheard groups of people to make films which reflect their own interests and concerns (Robertson & Shaw, 1997), adaptations to allow people with disabilities to take part would appear vital from an ethical point of view. Yet ethical issues in general do not appear to have been given sufficient consideration in the participatory video literature to date, and there is little evidence of engagement with emergent areas of debate such as the ethics of visual research (Prosser, 2008) and the importance of working in solidarity with people with reduced or fluctuating mental capacity (Nuffield Council for Bioethics, 2009)

'This is my turn; I¿m talking now¿: findings and new directions from the Ex Memoria project.

yesAlthough training and workforce development are high on the policy agenda at present (eg DoH 2009), there has been less progress in thinking about the kind of education that might be needed in order to provide dementia care that is genuinely person-centred. A continuing obstacle here is the tendency to assume that people who have dementia are to be understood ¿ as a group ¿ by virtue of their shared diagnosis rather than by their lived experience, in which diagnosis is an interruption rather than the whole story. Three approaches to overcoming this obstacle that I will discuss below are arts-based learning, teaching social history awareness, and increasing the involvement of the ¿experts by experience¿, people with dementia themselves

Participatory video and situated ethics: a pilot study involving people with dementia.

yesIt might be argued that visual methods are particularly appropriate in research involving participants whose ability to express themselves verbally (eg by means of formal interviews) is compromised for some reason. One such group of participants is people with dementia, a condition often characterised by fluctuations in memory, concentration, comprehension and speech. Whilst increased research into the subjective experience of people with dementia is vital, this can often be hampered by the difficulties of ascertaining participants¿ capacity to give informed consent. Ideally, also, research should go beyond non-malfeasance, and offer real benefits to those involved. People with dementia are all too often subjected to social exclusion and narrative dispossession (Baldwin 2006), so research practice should reverse these trends as far as possible

Ex Memoria: In Eva's case - some memories fade - others keep returning.

yesEx Memoria is a short film - just 15 minutes long - which focuses on the experience of Eva, a woman with dementia living in a nursing home. The film - which is the result of a collaboration between Bradford Dementia Group (BDG), writer/director Josh Appignanesi, and producer Mia Bays - attempts to show how life might be experienced from Eva's point of view, in her 'version of reality'. In this article I will outline the background to the making of Ex Memoria, explain how the film is being used on the Dementia Studies courses provided by BDG, and - without giving away too much of the story for people who haven't yet seen the film - summarise some of the responses to it

Re-Walking the City: People with Dementia Remember.

yesWithin the dominant biomedical discourse, late-life dementia is regarded as a pathological condition characterised by short-term memory loss, word finding difficulties and ‘problem behaviours’ such as ‘wandering and ‘repetitive questioning’. As its title suggests, one of the main purposes of this chapter is to shift the focus from what people with late-life dementia forget to what they remember, particularly as this relates to places they have known much earlier in life. A central part of my argument is that dementia, often somewhat crudely represented as wholesale memory loss, might better be regarded as a form of spatio-temporal disruption; a disruption which intersects with the theoretical territory of psychogeography

Digital storytelling with people with dementia in longterm care: place, home and community

Over a period of 18 months, we worked with ten people with dementia living in a long-term care environment to co-produce digital stories on subjects that were of interest to them. Each participant made an individual short film (range 3 - 12 minutes). All the participants chose to base the story they told on their own earlier lives, and to locate it in a specific place. This suggests that people with dementia continue to associate a sense of identity with specific communities, and with concepts of home and belonging. The presentation will explain how we drew on local history archives and creative commons sources to co-create short films which represent the important messages the participants wanted to convey about themselves and their lived experience. In the process we encounter many intersectionalities with social history during the 20th century due to factors such as world war, slum clearance, the growth of social housing, the demise of manufacturing industry and the changing roles of women.info:eu-repo/semantics/publishedVersio

Dancing to the music of time: an experiential learning exercise in dementia care.

This article presents findings from an experiential learning exercise in which 34 care practitioners enrolled on a part-time BSc programme in Dementia Studies were asked to identify their own favourite music, and then to investigate the musical preferences of one of their clients with dementia. For both groups, practitioners and clients, three dominant themes influencing choice of music emerged: loving relationships; significant life events and places, and a sense of physical enjoyment. This exercise enabled the group of practitioners involved to identify commonalities between their own musical memories and those of their clients with dementia. They also uncovered considerable amount of new information about their client¿s life histories. On this basis they were able to make a number of new recommendations for improving care practice

Ethnography in Dementia Care Research: observations on ability and capacity

noThis case outlines the rationale and methods used when carrying out ethnographic fieldwork in a care home environment with research participants who were living with a dementia diagnosis. Although concerns had been raised at ethics approval about the use of such methods – visual ethnography in particular – we found that there were ethical benefits for the participants whose capacity for research participation, and for social participation generally, was, in every case, higher than anticipated at the outset. By comparison we found that formal methods for assessing ability to give informed consent often appeared to create excess disability, and to exacerbate ill-being for people with dementia. The case draws on specific examples to show how issues related to methods and to ethical conduct of research are frequently intertwined, and should be considered together rather than in isolation

Place memory and dementia: Findings from participatory film-making in long-term social care

yesA participatory film-making study carried out in long-term social care with 10 people with Alzheimer-type dementia found that places the participants had known early in life were spontaneously foregrounded. Participants’ memories of such places were well-preserved, particularly when photo-elicitation techniques, using visual images as prompts, were employed. Consistent with previous work on the ‘reminiscence bump’ in dementia, the foregrounded memories belonged in all cases to the period of life between approximately 5 and 30 years. Frequently the remembered places were connected with major life events which continued to have a strong emotional component. The continuing significance of place in the context of long-term dementia care is considered from a psychogeographical perspective